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Ocrevus
Posted: Mon Feb 12, 2018 6:46 am
by ebrownkirkland
Hi there. My husband was diagnosed with RRMS back in May, but now the doctor thinks he may have PPMS. He suggested that we look into Ocrevus. I have been reading about it a little and it sounds scary (could cause cancer, could lead to death), but it's the only MS drug out there that treats PPMS. Anyone have any experience with it?
Re: Ocrevus
Posted: Tue Feb 13, 2018 1:55 am
by NHE
ebrownkirkland wrote:Hi there. My husband was diagnosed with RRMS back in May, but now the doctor thinks he may have PPMS. He suggested that we look into Ocrevus. I have been reading about it a little and it sounds scary (could cause cancer, could lead to death), but it's the only MS drug out there that treats PPMS. Anyone have any experience with it?
I have no experience with Ocrevus, but a good place to start is to read the
Prescribing Information. Be sure to look up any words you don't know. The
Free Dictionary has a medical dictionary available which works well.
Re: Ocrevus
Posted: Sun Aug 05, 2018 6:59 pm
by Anunymouse
I've been on it for over a year. I'll be on my 3rd dozen in October. My Dr says there is nothing new in regards to the cancer risk and the number of people in the study that did get cancer was not out of the norm for the regular population. He says he has seen a good response with the patients he has on it.
Re: Ocrevus
Posted: Wed Nov 21, 2018 5:44 pm
by Kheuer
ebrownkirkland wrote:Hi there. My husband was diagnosed with RRMS back in May, but now the doctor thinks he may have PPMS. He suggested that we look into Ocrevus. I have been reading about it a little and it sounds scary (could cause cancer, could lead to death), but it's the only MS drug out there that treats PPMS. Anyone have any experience with it?
I'm 5 months post first infusions. They have no idea what type MS I have.
I had classic epididymal dot dash dot, plus paraventricular white matter lesions and a large 2cm avoid lesion in the cerebrum
I was diagnosed in April 18, at age 46 male, after 1 year of symptoms. Ocrevus started May 2018.
No side effects.
I can say that the 2cm ovoid lesion on my MRI in March, was gone in an MRI I had in September.
It also seems there is a less pronounced .-. but ???
No real progression, other than balance, which could have been evident before.
Re: EXPERT DISCUSSES FIRSR AND ONLY DRUG APROVED FOR PMS
Posted: Tue Jan 29, 2019 3:50 pm
by seeva
Re: Ocrevus
Posted: Tue Feb 11, 2020 1:42 pm
by Anunymouse
I've been on it 3 or 4 years now, the only actual MS drug I've taken. In general I've never had relapses even though I'm dx'd RR. My secret suspicion is I'm actually Ppms. No MRI drain bramage but fatigue and a f'd up leg, lesions in my spine. But a PpMS dx shuts me out of certain insurance routes so I think the drs try to keep you in the RRMS category whenever possible. If they switch to PPMS, ocrevus is he only drug you'll be able to get. and if they put you in spms, you can exactly squat since nothing is approved for it.
I can't say I've seen any improvements and I can't say that I would be better or worse off of it. I know I'm worse since I started, but there's no way to say if I would be even worse off it. One of the great wonders of MS meds, no one knows for sure what would happen off them, or what is happening on them.